Supporting Young Breast Cancer Survivors, Metastatic Breast Cancer Patients, and their Families - Organizational Background: Living Beyond Breast Cancer (LBBC) is a national leader in developing high quality, evidence-based information and supports for all people with breast cancer. As one of the first organizations created to fill patients’ needs for breast cancer-related information, connection, and support, LBBC continues to advance its mission by providing tailored resources to young breast cancer survivors (YBCS), metastatic breast cancer (MBC) patients, their families, caregivers, and healthcare providers (HCPs). LBBC’s programs serving those diagnosed under the age of 45 were launched and have continuously grown through its 2011, 2014, and 2019 cooperative agreements with the CDC. Purpose: Over a five-year period, LBBC will increase availability of and equitable access to psychosocial and structural support services and post-treatment opportunities for YBCS, MBC patients, and their families through key expansions and refinements to its YBCS and MBC patient programs alongside technological innovations, and will provide educational programs and resources aimed at improving patient-provider interactions throughout treatment and subsequent care, especially for survivor groups that have been economically and socially marginalized. LBBC will (1) listen closely and systematically to what YBCS and MBC patients report to be their psychosocial and structural support needs; (2) enhance and scale its Survivorship Series in collaboration with community cancer centers and safety net hospitals to include psychosocial partners and newly designed programs and resources that address the psychosocial and structural needs identified in the listening phase; (3) grow the Young Advocates Program to increase storytelling and advocacy impact as part of its policy, systems, and environmental change agenda; and (4) leverage the expertise of its staff, partnership network, and medical advisory board to create new educational opportunities for HCPs focused on navigating difficult conversations, incorporating palliative care early in the care trajectory, equitable use of cancer care plans, cultural awareness, competency, and humility, and self-care to navigate and reduce burnout. Outcomes: Both independently and via collaboration, LBBC expects to achieve the following outcomes by the end of the five-year performance period: (1) improved engagement and contribution of organizations that serve YBCS, MBC patients, caregivers, family, and friends to structural and psychosocial support services; (2) increased use of culturally appropriate interventions to expand program reach among survivors that come from various cultures, identities, and backgrounds; and (3) established and maintained structural and psychosocial services in accessible settings for patients, survivors, caregivers, families, and friends. Achieving these short- and intermediate-term outcomes will ultimately enable LBBC to contribute to long-term outcomes, namely, (1) increased equitable access to psychosocial and structural support services for all YBCS, including MBC patients, and their families by supporting organizations and entities that serve this population; and (2) improved quality of life among all YBCS. LBBC’s nationally recognized expert staff will use a mix of needs assessment, direct programming activities, and technology optimizations to maximize organizational capacity at the national scale, expanding its collaborative network to promote more equitable access, educating and advocating for policy, systems, and environmental change in integrating medical and psychosocial programming to take a more systemic approach, and providing targeted supports to families, caregivers and providers to deepen psychosocial supports to YBCS and to stem burnout in the cancer care provider field. Through this award, LBBC expects to reach and support over 400,000 YBCS and MBC patients and their loved ones, and 15,000 HCPs, an approximate 25% increase over 2019-2024.
